An uncommonly clever, insightful, and funny voice of reason* in all this multiple sclerosis silliness

Saturday, November 5, 2016

The Occasionally Merciful MS Gods

Demi Moore was just going to have to wait for me.
In fact, I didn’t even know she was there, much less an arm’s length away,
which was probably a very good thing. See, at the time, I was descending some
extremely precarious steps at Machu Picchu… on my rear end, one slow butt scooch
at a time. And Laura definitely did not want to hear my final words be a surprised
celebrity-induced exclamation “HEY, AREN’T YOU THE ACTRESS DEMI MOOooooooooore” as I
plunged off a precipice, fortunate to being wearing bright prisoner-orange
pants so my body would be easier to recover.

Honestly, I never thought I’d get here, to see
firsthand one of the wonders of the world. With my mobility restrictions due to
multiple sclerosis, heck, it wasn’t practical for me to be anywhere near here. Especially on this day, of
all days.

A steady rain had glazed our train car all morning,
turning the scenic ride to Aguas Calientes—the launchpad for the Inca ruin—into
a trip that forebode misfortune. The rocky steps and paths of Machu Picchu,
already worn smooth over the centuries, were sure to be as slick as a throw rug
on a freshly waxed floor. As we picked up rain ponchos in the market to go with
our raincoats and umbrellas, my stomach churned.

Up until now, the MS gods had been incredibly
merciful on this trip. Despite forecasts of rain, we had met only sun. Food and
stomach issues were never a problem, illness had thankfully stayed away (when I
hugged my mom goodbye for this vacation, she informed me she had just gotten a
cold!), and even my bladder and bowel issues were cooperating as much as they
can cooperate. That was a bit of a shocker, as staying well hydrated was
critical to avoid altitude sickness, a common and debilitating threat in the
Andes that was never realized in our case.

As our bus twisted up the mountainside to get to
the 15th century Inca citadel, a 30-minute bumpy ride, I was resigned to spending
the afternoon parked next to a covered gift shop touting Peruvian knickknacks,
clothing made with faux alpaca, and pan-flute CDs (gah, playing on repeat!).
And then the rain stopped, the mist lifted, the sun shone, the rocks dried. I
was going to be able to visit Machu Picchu, a place I thought forever off
limits. Thank you, MS gods!

And then we got to the entrance… with steps
everywhere. And I was informed that if I had to use the bathroom, now would be
a mighty good time—I'd have to hold it for the next five hours—as there were no
facilities in the ruins. And, warning, there were many more steps to come
before we could reach any vista, only without those pesky, helpful railings
found at the entry. And because the Inca were such anal-retentive master builders,
deep handholds in the wall were virtually nonexistent since virtually every
rock was a perfect, snug fit. Curse you, MS gods!

But then, serendipitously, it
all happened. I managed the myriad steps (slowly). I managed the narrow
passages (slowly). I rolled on the packed dirt paths clinging to the hillsides
(slowly). And when we reached the Temple of the Sun, the most important
building in all of Machu Picchu, the decision to climb to the base was
nonnegotiable. The brilliant Torreon was as advertised.

We discovered Demi later in a photo (bottom left in purple).

Taking in what I had
just accomplished, I realized just how fortunate I had been. Multiple sclerosis
tried its best to stop me, and it failed today. I also realized that it was
wise not to push my luck. I know too well the fickleness of those MS gods. It
was time to find a safe zone and park it so Laura could fully explore Machu
Picchu. That meant instead of picking my way down the OMG steep steps of Temple
of the Sun on forearm crutches (no doubt risking a trip-ending fall), I opted
for the far safer technique of dropping down one step at a time on my duff:
Move one leg, move the other, drop a step, repeat.

Thanks for understanding,
Demi.

*For those wondering, and I know many of you are,
unbelievably I did not have to pee for the full five hours we were away from
the bathroom. My extra layer of protection was never needed. The MS gods may
never be so kind again, but I’ll take it. Also, my guides at Aracari (www.aracari.com) probably had a hand in my success as well.

Great story, Dave. My biggest fear while travelling and having to go to the bathroom - a hot mess if you're a woman and in India. And we MSers hate it when it's hot (Speaking of which, I need to invest in a She-Wee).. I've been doing some research on the (lack of) toilets in India - and every time I rush to the bathrooms at home, I'm glad I don't need to hold like the millions of women in India who have to wait for the cover of night to relieve themselves in a field

Fran, India is a bathroom challenge no doubt. And it is compounded if you have a disability, as many of their toilets are of the squat variety. If I tried that these days, I wouldn't be getting up! But it's doable, especially if you have good guides and a solid bathroom plan when out and about (knowledge of hotels/restaurants with western toilets). And of course wear protection for when you need Plan B.

Oh, thanks Fran. :) As for the tour, we had to do it privately. I slow down groups too much these days, although I could have potentially done a group trip for disabled folks (those exist, and I may even work to arrange one in the future). The wheelchair: Invacare X4. I like it, but don't love it.

Why is it I always smile when reading your posts even though I think you are not so much brave but tempting fate for repeatedly challenging the MS Gods? You get me every time with your travel tales and this one is no exception. Thanks for being out there and letting us know that while planning is good, overthinking would stop us from doing more. Keep on keeping on....

And BTW I now own my own orange pants and they definitely allow us to be spotted in the crowd or in the bushes. No hiding what you would have been doing if the urge had to be satisfied up there.

Dave, I love your posts. Thanks for sharing your travel experiences. I love to travel. I went to the Holy Land on a group tour in October, and I felt like I slowed the group from time to time. I certainly hope you do organize a trip or two in the future. It would be great to travel among similarly situated MSers. Thanks, again!

Belinda, there actually have been discussions of an ActiveMSers trip recently, but there are a few hurdles I'm trying to work around. Like what happens when there are finite toilets at bathroom stops and everyone has to go NOW. And potentially limited accessible rooms at hotels. Hmm. But I think it can work with the right planning. Stay tuned!

Dave I happen to read about your adventure a couple of months ago. 2 weeks before Christmas I received and invitation to visit Guatemala.I decided to say yes, and an adventure I did have. Your encouragement to not let MS beat us and advice paid off, I spent 2 weeks traveling from Guatemala City to San Antonio Huista in the highlands. I did not climb a Mayan temple (the steps were 5 inches wide to my 9 inch foot)and I figured that I would be safer on the ground.

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About the Blog

This is the official blog of ActiveMSers, which is designed to help, motivate, and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually, and socially—regardless of physical limitations. It is written by founder Dave Bexfield and was started in 2006. Topics include: getting diagnosed, dealing with symptoms, staying active, and hope. Laughter is always encouraged.

About Me

For better or worse, I’ve learned a lot about handling this disease (um, more than many) since I was diagnosed in ’06. And I’ve written about that experience here, where I take a personal look at MS … with a tilted head, raised eyebrow, and a cracked smile. It may be just what the doc ordered when you want an escape from the oh-so-serious world that is multiple sclerosis. (To read more about me, click the About Dave on the left of my blog home page.)